Christmas 2009

A Strange Life

Now that the Christmas rush is over, I feel I have a few moments to update! Catherine has been doing really well - she has had a few bad days on steroids and is currently on 'anti-spot' (Chicken Pox preventative medicine), but otherwise she is doing well. Catherine's sibling is also growing well and is due to make an appearance in the next few weeks. I had an appointment today with my Consultant (this makes a change as it is usually Catherine's Consultant), and it is funny how Catherine just gets into the 'hospital zone'. She is so used to hospitals and Consultants and has her own routine, that seeing another consultant is really no big deal. She was fascinated today that, as they examined my tummy, the bed I had to lay on was NOT ELECTRIC. Yes, it was one that is raised jerkily by a foot pump and Catherine was not impressed. Her favourite bit about seeing her Consultant is when he examines her belly, and she gets to work the electric controls on the bed!!!

Anyway, I have made two medical professionals come close to tears in the past two weeks - not through anything I've said or done, but just when they meet Catherine and read my maternity notes. I find it all so odd really, because I forget that people think we have been through a big ordeal. We just kind of get on with life, and it is only when midwives read about Catherine on my maternity notes, and the complications of this pregnancy, that I start to realize what other people may be thinking. Life is certainly strange.

Another milestone

Catherine watched me having an injection today. This is a big milestone for her as she has always previously been so scared of needles that she didn't even want to look at one! I am pleased because eventually she will not have her portacath and will need to have injections and blood tests. This will hopefully help her get over her phobia.

Special gift

I am feeling quite emotional today as it has been agreed with our Consultant that when our baby is born, the cord blood will be stored. This is very special, as cord blood is used in Bone Marrow Transplants. Whilst we fully believe Catherine will not need the cells from the cord blood, her unborn sibling will be donating these cells which could, if unused, be a match for another child in need of a Bone Marrow Transplant. They will be stored at our hospital. Finding a match is very difficult in Bone Marrow Transplants. With a sibling's cord blood, the likelihood of a match increases. I never thought this would be possible through our hospital so am very touched that our Consultant is arranging it for us. Originally I had anticipated that I would have a home birth, but due to the medication I need to prevent further blood clots, I now have to give birth in hospital. However, today's news gives more purpose to this situation, and one day I will be able to explain to Catherine's brother or sister what their donation means.

Many hospitals now ask for consent to take cord blood and it is so worthwhile. The more who donate, the greater the chances of finding a match. For more on this, please see the link http://www.nhsbt.nhs.uk/cordblood. It is also possible for adults to donate bone marrow: http://www.nhsbt.nhs.uk/bonemarrow/patientstories. Thankyou God for the amazing abilities and knowledge you give to us to help cure such horrible illnesses.

Happy Day

Catherine has had a fabulous day today. She has been so happy and bouncy and has been laughing and generally having a really good time. She has also been back at school and everyone was pleased to see her. She has also made friends with a little boy (shocking, as Catherine didn't really like little boys much when she started school) and she told me they spent some time today kissing eachother on the cheek! She also had fun at school because they did a taste test of different fruits. Catherine LOVES fruit so she would have enjoyed every minute. Also, at bedtime, she chose a book that hasn't been read to her for ages, and decided she would read it. She read most of 'The Lion who missed his Breakfast' all by herself! I was so excited, I had to get Mark to come in and confirm that he hadn't read it to her recently. But sure enough, she read it!

The hospital said that her blood counts are due to drop again in the next few days, and to pack a suitcase in case she starts to feel poorly. But I'm so hoping and praying that even if her counts drop, she will still not feel too bad and will not need to go into hospital.

The case of the disappearing glucose

Last night, the hospital confirmed raised glucose levels in both Catherine's blood and urine.

However, in the time it took for her to transfer hospitals (3o mins) and have further bloods examined, the glucose had COMPLETELY DISAPPEARED. If anyone medical can explain this to us, please do, but the latest word we have is that she should be coming home today. The doctors and Jeannette (:-) ) think it may have been a side effect of steroids, but the fact that it just disappeared seems remarkable to me. Maybe I shouldn't be amazed, but it happened when we all started praying...

Thankyou again for your prompt prayers - time and time again they are answered in ways that astound us. The glucose explains why Catherine had been sleeping all the time, but now it is gone, Mark says she is leaping around the hospital!

I'm not sure why these things happen. I don't believe God causes them to happen, but I do believe that he does get involved when we approach him with faith.

'He gives and takes away
He gives and takes away
My heart will choose to say
Lord blessed be your name'.

Let's thank God for his amazing power today.

The latest situation - please pray

Catherine went into hospital to have some tests done to see why she has been so low on energy and not feeling herself. It is now 23:06hrs and the hospital has called to say that she has glucose in her urine and they are concerned that she may have developed diabetes. Alternatively, the steroids she has been on may have caused this symptom.

She now has to go in immediately to have a blood sugar test. This is a finger prick test which would be fine in someone who has no phobia of needles, but Catherine can't even see me having an injection let alone have one herself. If they find sugar in her blood she will need to stay in for further tests.

Please pray for her if you see this this evening or early tomorrow that it is not diabetes and is just a minor side effect of treatment. God is good - he will listen and answer. She has already had so much to deal with. Her parents are both exhausted with this Eastenders script lifestyle, so a prayer for renewed energy for us would also be appreciated. Please pray for Catherine today. Thankyou.

Poorly Catherine

Catherine is still very under the weather at the moment. She has slept most of the day and we are now wondering if she is becoming anaemic again. It doesn't help that her immune system is also not there, and she is also getting tummy aches and indigestion. We were hoping to be able to take her outside to see the Christmas lights being switched on tonight, but I'm not sure we're going to make it. Poor Catherine always seems to miss out on the fun bits.

If she still seems anaemic tomorrow we will take her to hospital to see if her bloods are really low. They will be able to give her a blood transfusion if her Haemoglobin is 8 or below.

Please pray that she feels better soon. Thankyou.

Portacaths and pantomime

Sorry I've not updated for a bit but I've not been well enough to blog.

Catherine is feeling low at the moment, so she has been at home with me for the past two days. I know she is not feeling good because she quite happily agreed to not going to school, despite the fact it was ballet day. Her neutrophils (immune system) are almost rock bottom and her HB is also taking a bit of a nosedive since her lumbar puncture and chemo. She is also on steroids so her moods are all over the place.

When she had her bloods taken, they found that her portacath (the little gadget under her skin used to take blood and give chemo) had got a bit blocked, so she had to have lots of heparin in it to flush it out. The nurses were very worried because a blocked port is not a good thing. However, we are hoping it is ok for her next bloods. We really don't want to have to replace it as it involves an operation.

We have been given two tickets from the Hospital to see the local pantomime next week so I'm just praying she will feel better by then. She is a real panto lover and is so hoping to see Cinderella. Last year she saw Peter Pan and didn't stop talking about it for ages.

Thankyou to everyone who continues to pray for Catherine. Please pray that her portacath doesn't need changing and that she doesn't get any infections or side effects from her treatment.

We still have just under a year's treatment to go...

Latest news

Catherine decided to cut out two gingerbread men shapes from paper today. On one she drew a sad face and on the other she drew a smiley face. When I asked her why one of them had a sad face she said 'It is you mummy when you are grumpy and moaning because you have to get up and get me breakfast'. It seems the happy gingerbread man is me when I get up and get Catherine her breakfast! Nice.

Catherine still has a cold but apart from having a bit of a sore back from her lumbar puncture she is doing well.

I am now recovering from having a blood clot on my lung. At least now we know why my pregnancy had been so painful!

Thanks for your prayers.

Another miracle!

Catherine went to hospital last night with all the signs of an infection. When she arrived at the hospital, her temperature had completely disappeared. Not only had her temperature gone, but when they took bloods they found that her immune system had almost doubled since that morning! Catherine and her daddy arrived home at 3.30am this morning. Thankyou God!

Infection

Catherine has just been taken to hospital with a temperature and infection. We were not overly concerned until they said they wanted to check her for Swine Flu! Please pray she is ok and that the temperature comes down quickly. We could do with being at home for a few days. Thankyou.

The multicoloured hair!

After a rather fraught school holidays with Catherine being on steroids, she has now come off in time for school next week! Her hair is growing back again but this time it is growing back really dark - dark brown/black! I'm not sure how impressed she will be with the colour but I think she has given up wondering about her hair. It may well all fall out again before the end of treatment, so there is still a way to go before we find out what it will be like long-term. But we think black hair and blue eyes would be a striking combination...

Thankyou for continuing to pray for Catherine. She IS continuing to do well despite the side effects of the steroids.

Bridesmaid Dress fitting (before her hair disappeared)

One ok, one not ok

Our internet has been down so this is the first chance I’ve managed to get to blog. This post might be a biggie!

Catherine is still doing well in herself, despite the odd tummy ache and feeling nauseous. She was ringbearer at a wedding this weekend and did very well despite being concerned that she would get her duties just right! I will try and get a photo uploaded of Catherine in her beautiful dress. Catherine is having Vincristine today (chemotherapy) at the hospital, and then the steroids begin for five days. It's a shame that she is on steroids during her school holiday, but at least she will be at home so wont feel so vulnerable. She is still on her daily chemotherapy medicine as well, and next week she is going for a 'special photo' - an ultrasound to check her kidney function. Please pray that this is ok and shows up nothing odd.

Whilst Catherine is ok, I am now not ok. I am having a difficult pregnancy because I am often in (sometimes considerable) pain. I'm not a wimp with pain (thankfully I think Catherine inherited this), but seriously, this can be as bad as labour! The latest addition is that I am finding it increasingly hard to walk so I have an appointment with the Physiotherapist on Wednesday.

Sometimes I really don’t think I was meant to have any luck in the childrearing department, yet optimistically I thought I'd have another child. Basically it is all Catherine's fault that I am having another one, not because it has been easy with her situation and in the early days, but because I love her HUGELY.

However, Catherine’s sibling is growing well and is getting much stronger, although he is not half as energetic as Catherine was. Catherine always used to like making her presence known, even when I was carrying her. I think this baby is generally much more chilled and prefers to nap than kick (praise the Lord). An easy baby after this pregnancy would be really appreciated (God, you need to listen to, and answer, this request).

Thank you for the prayers for our family and also for the card that we received. I’m not sure where it came from, as the postmark was blurry, but it was full of signatures and kind words. Please don’t forget to pray for Mark. He now has to look after both Catherine and I when we have our bad days. If you could pray for me on Wednesday, I would really appreciate it, mainly that I am diagnosed and that there is some kind of treatment/pain relief available to help us through this stage. At this rate, I may be coming back with crutches, and I'm only 26 weeks pregnant :(

Catherine is doing well despite a rather noisy night-time cough that she's had for a few days. She had her first full week at school last week, and has done very well. Her friendships are developing and the teacher is very pleased with her. Tomorrow we have our 'hospital day' where Catherine will see her Consultant and have her blood count taken.

Another good day!

Another good and happy day for our daughter! She now has some good friends and knows their names, and is so much happier and more content.

Bouncy, happy, confident & excited!

Well, what an amazing turnaround! On Saturday, Catherine was still distressed about having to go to school on Monday, but the steroids went from her body yesterday. So today she wakes up bouncy, happy, confident and excited about going to school. No worries about whether she can cope with the day. It was 'bye, bye, mummy' and out the door! There were no phone calls from school, and I saw her dinner lady before I went to collect her, and she told me Catherine had tucked in to sausage, beans and mash with chocolate cake for pudding! So I arrived to pick her up and she was fine and happy and was delighted when I suggested going to the cafe for a snack. A totally happy bunny! I think, after the past six weeks, we might be seeing the real Miss Catherine once again.

Last night Catherine was awake in our bedroom crying and very anxious. She is extremely worried about school because she doesn't feel like she has enough energy to keep going for the full day. She also gets worried when there are any big changes - a supply teacher came in the other day, and any such changes can really worry children on chemotherapy.

We spoke to her lovely teacher today, and she came home at lunchtime. She is now in bed having a nap. I really feel for her as she was so worked up last night. She wants to go to school but is finding it very hard. These last two days it has also been worse for her as she is on steroids. Her neutrophils are also still down, although not so low as to be at big risk of infection.

Having said that, she was awarded the 'Busy Bee of the week' certificate by her teacher this week, and yesterday she came home with a little bracelet with 'Hard Worker' on it. She has also made some lovely friends, but today she just felt so low she didn't even want to see them.

Steroids

Catherine is now back on steroids. She is not very happy. Her neutrophils are also quite low, so she is a bit up and down with that as well.

Oh well, Catherine had two (reasonably) cheerful days...

Please pray for Wouter today. Wouter is receiving treatment for Rhabdomysarcoma but currently has pneumonia. Thankyou. http://krokkenoster.wordpress.com/

Hair raising day

Today is the first day for ages that Catherine is acting her old self. She has been out and about with us today and has been inventing craft activities and games at home. The only problem she has mentioned is that her head feels prickly when she lies down due to the roots of her hair on her pillow.

She is now wearing her new hair when she is out and about which is woven in lovely little mini-plaits under a bandana. Everywhere she goes she is complemented on her pretty hair. The only problem is that I get some really evil glances from other mums, as if to say 'When does that woman get the time to do her child's hair like that!'. Little do they know.

Catherine made her usual impact in the cafe today, as she removed her hair just as I was ordering lunch. The ladies behind the counter suddenly looked shocked, so I turned round, only to see my hairless daughter waving her wig. They tried to look like they hadn't noticed and reacted, but it was too late! Poor women. I hope Catherine doesn't make a habit of this. I don't think people's nerves will stand it.

She is still taking all her medicines but is now also back on her chemotherapy.

Last night at 3am I waved goodbye to my very hot daughter - who was then 38.6 degrees - and a very tired husband. Only one of us could sleep at the hospital so I had to stay at home. It was hard waving goodbye to them, and Catherine was upset because she said she would miss me and 'bump'.

Just before I was due to travel to the hospital, I had a text from Mark telling me Catherine's temperature had miraculously returned to 36.8 degrees and we might be able to come home today. Sure enough, the Consultant agreed at lunchtime that she could come home with oral antibiotics. It is highly unusual for us that her fever has just resolved itself, and normally if Catherine spikes a temperature, we are in hospital for at least three days! As long as her temperature remains stable and no cultures grow at the hospital, Catherine will be able to get better at home. It was such a relief, and it was lovely to welcome Mark and Catherine home at 3pm today.

THANK YOU for praying!!!!

What else????!!!!!????

Catherine has just come in this evening with a temperature over 37 degrees, feeling as warm as a cuddly hot water bottle. She also has a runny nose. If her temperature gets to 38 degrees, we have to go to hospital for intravenous antibiotics. At our previous home, it used to be 38.5 degrees, but it is a different protocol here.

Oh boy. What else is going to go wrong this week? Mark has already made the 180 minute round trip to the hospital to get her a prescription for a different oral antibiotic this evening.

So far in the last few weeks Catherine has had, Mucositis, a urine infection, abdominal cramps, vomiting, Methotrexate rash, has lost all her hair again and now has the beginnings of a temperature. She has really gone through the wars this past few weeks.

Please pray that this infection/virus is mild and easily treatable. Please pray that despite me not feeling well, I manage to sort everything out with Cath over the next few days. Please pray that if she goes in, we still manage to balance a busy workload this weekend and that everything goes well.

And please also pray for Naomi Gammie, Catherine's little friend who is in hospital tonight being treated for pneumonia. Naomi is only a baby, and she needs our prayers.

I know we're probably going in because Mark has just started to pack the hospital bag, and he's only just taken Catherine's temperature again...

Mohican

Catherine ran into our bedroom this morning shouting 'mummy, I've left all my hair in the bed'. We opened our eyes to see that, sure enough, all that was left of Catherine's hair was a mohican style. Basically, as she tossed and turned in her sleep, it has rubbed off all the hair around the sides and back of her head. She was shocked, but when I opened my eyes, all I could see was how amazingly big and beautiful and blue her eyes were. So the first response she had from her mummy was 'wow, you look beautiful'. This totally calmed her and she started to giggle whilst pulling out remaining bits of hair. However, when she saw the long mohican bit in the mirror, she wanted that bit to go away. So this morning we shaved off the remaining hair and her scalp feels better now and less tender.

She looks so beautiful without her hair. Now that her face has matured, being hairless looks even better on her than it did when she was three-years-old. The only problem, of course, is the reaction she gets from others, particularly other children. If she doesn't wear a wig, she gets lots of stares from children and puzzled comments (see http://catherineisgreat.blogspot.com/2009/02/shes-got-no-hair.html). This is why I wanted her to have her own hair for school. But today we are phoning the Princess Trust to try and arrange new hair for her, as we didn't use them last time because we had hair supplied. She is also seeing the Consultant to see if he has any more NHS hair available for her.

I think the Consultant might be a bit shocked to see her today. Last week she was with hair and this week it has all, unexpectedly, disappeared again. Also she now has a 'Methotrexate rash' - a little red rash on her cheeks. So she looks very different from 7 days ago, bless her.

At the moment, it looks like the Vincristine probably caused the hairloss, but we are not sure whether this has happened as a cumulative effect of taking the drug, or whether the dose increased. Mark will find out today, as unfortunately I can't get to the hospital. Catherine will also have her bloods taken to check that her neutrophils have bounced back.

Please pray that her hairlessness is well accepted by the children at her school. This is a real worry for me as she has had her confidence knocked enough through this treatment.

Being an 'oncomom', 'Catherine Confidence' and 'SCB's'

(Catherine and her mum before the latest hairloss.)

I've taken the inspiration for this from Suzanne's post at: http://krokkenoster.wordpress.com/2009/09/15/week-34-day-2/ as it got me thinking (thankyou, Suzanne).

Suzanne writes about how odd it can be being an 'oncomom' - a mum dealing with the oncology treatment of a child. It is quite hard to go through something like this without becoming a bit defined by a child's illness. It is a bit like being a first time mum, when suddenly you become 'Milly's mum' or 'Jake's mum' and all the attention goes from you to your child. Being an 'oncomom' is a bit like doing that again but with the added look of distress or discomfort in people's eyes when they first find out, rather than the one of 'isn't he or she perfect/cute/squashed' that you get with a newborn.

It is also odd how sometimes you end up discussing various chemotherapy drugs and neutrophil counts with complete strangers as if they had any idea what you were talking about. Occasionally, of course, you meet an expert, disguised as a regular individual, who understands the intricacy of different chemo regimes. THEN you get to have a huge discussion about chemo and their experiences either treating cancers or living with them.


I have come to feel, when people ask how Catherine is, that I could reel off any number of deep medical discussions about different forms of treatment. This weekend, for example, I even diagnosed Catherine's infection before the doctors! How can this be? I'm not medically trained, nor did I have any aspirations to be in the medical profession. What's more, I used to have a phobia of hospitals - now they feel like a second home. I walk into a hospital and immediately go into a state of apathy, based on days of being 'inside' and having to turn my brain off because there is nothing else to do. I know where the coffee machine is, I know how 'society' works in hospital. I know what sort of conversation is acceptable with the other parents and what to avoid.


But the most important thing about being an 'oncomom' for me is about remembering that I'm in this for the long-haul (turn away now if you don't like emotional bits).

Mark and I had various aims at the beginning of treatment. Firstly, that we would preserve our daughter's 'Catherine Confidence'; that the assertive, confident little girl that entered treatment in August 2008 would not lose the natural confidence and strength she has displayed, so articulately, since birth. Secondly, that Catherine would not turn into an 'SCB'. An 'SCB', as defined by the medical profession at the beginning of treatment, is a 'Spoilt Cancer Brat'. We had been warned early on that children could become extremely spoilt during treatment as parents overcompensated for their child's illness. Spoiling, they said, results in a child who is more unmanageable and demanding after treatment has ended; one who is never satisfied unless they get exactly what they want, when they want. It is not easy, when you see your child suffering, to not cave in to their demands for anything. It is not easy, when your child is feeling ill, to keep disciplining them - especially when it is hard to tell if they are being a toddler pest or are really hurting. But if Catherine is going to turn into the adult she has the potential to become, we have to keep on with these goals. I don't know if we're getting this right all the time, but it is worth a try.


We might not have had any say in how her treatment was put together. We certainly didn't have any control over the original diagnosis (supposedly 1 in 6 million children are diagnosed with childhood cancers). But we can do all we can to support and strengthen our girl, hopefully without turning her into a pretentious little miss! So if my opinion is worth anything to other oncoparents out there, whilst we might not be able to change the facts ourselves, we can work on our little individuals, focussing on their characters and personality to make the outcome, after treatment, the best we can. Let's take back a bit of control where we can!


In these early years of her life, please pray with us that we can be good enough parents to get our girl through all this in the way that will be best for her in the future. Thank you.

Unexpected hair loss

Catherine is losing her hair again!?!? On Saturday I was cuddling her and when she raised her head from my shoulder, I was covered in her little curls. Mark and I were both shocked (again) as this wasn't supposed to happen during her maintenance treatment. I was dreading telling Catherine but she soon realised, as her curls fell and tickled her face. She was a bit shocked to start with but is bearing up well, although she has started wearing her long wig again to school. Her hair is starting to come away in clumps this evening, so it looks like she will be hairless again by the end of the week.

I spoke to the doctor on Saturday - we had to go and get her some oral antibiotics for a mild infection. The doctor said that maybe Catherine's body was just very susceptable to the slight change in her chemotherapy dose which might account for her Mucositis and hair loss. It is highly unlikely to lose hair in maintenance but it is still possible. We are still slightly confused but will see the Consultant tomorrow.

All these things do not mean that the chemo isn't working - the chemo is working almost too effectively in Catherine's body, and we are grateful for this.

But I am so sad that she is losing her hair again. Only a week ago we were planning her first hair cut!

Phew

This morning Catherine's ulcers looked much smaller - by lunchtime, the ulcers on her lip had almost vanished! She is now starting to speak again and she has a bit more energy. Once her ulcers have healed we are then just waiting for her immune system to come back. Then she will then be able to go to school again, which she is actually looking forward to! Thankyou so much for your prayers. I was amazed to watch her ulcers this morning disappearing before my eyes!

Hard going

This is hard. I am tired. I wish Catherine was feeling better. She still isn't speaking and she is just really miserable. Her tummy pain seems to have gone but she is still only eating her cheese spread sandwhiches. This is very demanding.

Catherine is a little bit better today, but still has some way to go. Her ulcers look a bit better and she was able to speak a bit more today, although she prefers to point or signal at things rather than speak. It is really difficult seeing her in such discomfort but she is being brave. She gets most frustrated at not being able to do her usual things because she just doesn't feel like it or her mouth hurts. She is always pleased to use her mouthwash because it seems to really soothe her mouth.

She is currently living on cheese sticks, yoghurt, bananas and cheese spread sandwiches (made with soft bread and without crusts). It is her decision not to eat anything else. She had a small piece of chocolate today and it really inflamed her ulcers so it put her off trying anything else apart from her 'safe' foods. She is still able to eat and drink though which is good for someone with mucositis.

We went for our twenty week scan today and we had to take Catherine with us as she can't go to school (although we kept her away from other people as she is still without an immune system). We also had her bottle of hospital-strength hand gel with her! Once we had the photographs, Catherine decided she wanted to get one framed and put in her bedroom. So this evening, we have been framing a picture of 'bump' and it is now a surprise for her for the morning. I asked Catherine what we should call bump. I'm not sure why, but she decided we should call baby 'David'. Then she thought again and said, 'let's call baby Jesus, mummy'. Then she changed her mind and thought that actually perhaps David was best!.

Thankyou for your prayers.

Mucositis and no neutrophils

Catherine has mucositis, the painful inflammation and ulceration of the mouth and digestive tract.

It is no wonder she has had a painful tummy. Yesterday, she stopped speaking because of the pain in her mouth, and only today did we spot ulcers which had formed on her bottom lip. She is also only eating soft foods. The Consultant said she also has an ulcer in her mouth and on her tongue. This condition is a side effect of one of her chemotherapy drugs - Methotrexate. He said it could be very painful.

Mucositis at this stage in her treatment was a bit of a shock to us as it is usually something experienced during the intensive blocks of chemotherapy. We hadn't even considered it as an option before we saw the Consultant today. Also, because we have had no real side effects from her treatment until now, it added to the feeling of shock. However, we are relieved to know what is going on.

Chemotherapy kills off all the fast growing cells, and this includes those in the mouth and stomach. She also has no neutrophils (absolutely no immune system), which is why the mucositis has become so bad.

We have been told to continue her antacids as this will help relieve her tummy while the ulcers heal. She now has a special mouthwash, lots of painkillers, and a gel to help her mouth heal.

So now Catherine is on:
Anti-sickness medicine
Gaviscon
Omeprazole for stomach acid
Preventative medicine against chest infections
Painkillers
Medicated gel mouthwash
Gel

They have stopped her chemotherapy until she recovers. Normally she takes these drugs:
Methotrexate (weekly)
Mercaptapurine (daily)
Vincristine (monthly)and Dexamethasone (steroid for five days a month)
Methotrexate into her spinal fluid (every three months)

She is going to be off school for quite a while as she is just too poorly to go in. She was upset when I told her as she was excited about going to the canteen for school dinners 'all on her own without mummy and daddy'.

Thank God that we have a Consultant who is both very compassionate towards Catherine and also very skilled. Whilst he said that it is a sad problem for her, he also said that he is pleased she is neutropenic, because if she never became neutropenic in her treatment, they would not be pushing the treatment hard enough to ensure she remains free from Leukaemia.

Please pray that she heals quickly and that her neutrophils bounce back as soon as possible. Please also pray that she doesn't get any more side effects or infections.

No further on...

I have to say I am worn out with trying to work out what is wrong with our daughter. Catherine is still not right and I am lost for ideas. Her neutrophils still need to recover but I'm now starting to wonder whether she is also anaemic. She keeps complaining and then lying down for a bit but not really sleeping. Then she complains of a tummy ache or ear ache. She also has a sore tongue and her lips look a bit red. We are at the hospital again tomorrow morning, so hopefully her Consultant will be able to shed some light on what is going on.

Gaviscon, side effects and neutrophils

We had to go to the hospital today as Catherine was ill all last night, and it seems that Catherine's nausea and vomiting is most likely caused by her stomach having become inflamed from her chemotherapy.

She has become taller recently, and whilst this is a good sign, it meant that her chemo had to be increased to account for her being a larger person! Since then, she has had bouts of nausea and last night she was up most of the night vomiting. It was made more weird by the fact that she only felt really sick at night and in the morning.

So it seems we have a side effect of chemotherapy, made worse by the fact she has felt nervous about school. I had suspected some type of reflux and she is now just like her mummy in taking Gaviscon (Peptac) with Omeprazole. There seems a cruel irony here.

Her neutrophils have also taken a big hit and she is neutropenic (without immune system), which explains why she has been taking naps at odd times of the day. We are waiting to confirm that there is no infection.

Obviously all this has made it much harder for her to adjust to school, and now Catherine feels her nausea will be solved, she told me she is looking forward to getting back to school. She has stopped her chemo for a week to allow her neutrophils time to recover, so we are hoping she will be well enough for school on Monday.

Please continue to pray she doesn't get any side effects or infections from her treatment and that her little tummy soon recovers from all the chemotherapy.

Very stressed small person

Well, yesterday's good start didn't last for long, as Catherine woke up again extremely nervous about going to school. She began feeling nauseous again, and kept telling us she was nervous. She went to school and had a nap for most of the morning. Her teacher phoned me to ask whether this was usual for Catherine, so I told her that it was unusual and explained how nervous she had been that morning. When I picked her up, she was looking quite worried and told me she felt sick and had wanted to come home, but as soon as we left the school building she perked up and told me she felt fine. It was almost an instant state change, so I think it is all nerves related. She hasn't yet plucked up the courage to speak to any of the other children, so I am concerned for her. Everything is so different for her - house, hospital, school and people - plus all the treatment she has had in the last year has been hard and scary. I'm just a bit concerned that emotionally, for the time being at least, she has had enough.

Please pray that she feels calmer about school and that she finds it in herself to deal with her nervousness. She has dealt with so much concerning her hospital treatment, such scary things, but I just think the whole newness of school - without her mum and dad being there as her security - is very difficult for her to deal with.

First Day!

It was Catherine's first day at school today. She was very nervous in the morning and in the days running up to school day, but I knew she would be fine. She went up to her new teacher, and as we were leaving, all we could hear was Catherine chatting away to her teacher. Sometimes I think Catherine is such a grown-up. She just went inside and started discussing what she was worried about with her teacher. I think Reception teachers deserve a medal when all the new children arrive. They all wanted her attention, plus the teacher had to deal with all the parents as well.

It turns out that Catherine's main worry was whether the other children would end up knocking against her portacath, but tomorrow, her teacher is going to explain about Catherine's portacath to the other children.

Catherine is now so excited about her new school. She told me she loved using the computers today, doing her drawing and storytime. So much so that I was told this evening to get everything ready for her tonight for tomorrow!

Sick and poorly

Catherine has been vomiting most of the night and has a tummy ache. It is not caused by her chemotherapy. She is feeling very miserable. The doctors are concerned that she might get dehydrated and need to go in for rehydration. However, at the moment she is still drinking. Her temperature has gone up a bit, so we are praying she doesn't need to go into hospital today. Please pray with us.

Catherine has been poorly on and off all week. Mainly she has been nauseous and has had headaches but today she was actually sick, so I'm now hoping she will soon start to feel better, especially as she starts school on Monday. Thankfully she still has one neutrophil (!) so she has a very small immune system. She also has no temperature so we can look after her at home. She is currently fast asleep on the sofa. These are some recent photos of her, one from at church and the other when she 'met' Dorothy from the Wizard of Oz. We had a very good day at the hospital on Tuesday. The consultant has told Catherine that they will continue to take her bloods from her portacath, so she is now not terrified to go to the hospital for her treatment. I think the nurses were amazed at how calm she was about having her portacath accessed. She even refused to have any cold spray to numb the area. I think she was just so happy not to have to use the 'finger clicker'.

Hospital day beckons

We were planning to take Catherine to the farm today, but she ended up waking up feeling poorly - she felt sick with a tummy ache. She spent most of the day snuggled up with her teddy on the sofa or in bed, but thankfully felt better this evening. Tomorrow we are going to hospital for more Vincristine chemotherapy. Hopefully they will take bloods from her portacath and not use the finger clicker tomorrow, otherwise we will have a devastated daughter on our hands. Our consultant said we will need to have the finger clicker every second appointment, so hopefully the nurses will be ok with taking some blood from her port before we have the 'cold medicine'. Please pray all goes well. Thankyou.

The anniversary of the beginning of treatment

Today is the anniversary of the beginning of Catherine's treatment - she was diagnosed on August 26 2008.
It is hard to believe that it has been a year since treatment began. Here are some photographs of Catherine's journey that I would like to share with you, each one bringing back memories of every part of treatment so far. One more year (and a bit) of treatment to go.




A few weeks before diagnosis.




















The day of diagnosis. Catherine was asleep when we were told the news.












Brief respite at home to pack before going into Jimmy's to begin intensive chemotherapy treatment.

The needles and canulas begin



























Catherine names her drip 'Melody' because it makes a musical bleeping sound.











Back in London, the steroids begin to take effect. Catherine has now also had surgery to put in her portacath.













Catherine's hair starts to thin and she continues to be effected by the steroids.

A blood transfusion at The Royal Marsden in London.

Hair now completely gone. It is hard to imagine that she had no hair six months ago.

















Catherine out and about with her 'hair'
























One of our hospital stays. Thankfully, Catherine only had an ear infection.











Through her intensive chemo and out and about in London.

During the 'chicken-pox' scare, although Catherine amazingly never got chicken pox!

Nocturnal

Catherine and I have been talking a alot recently about the way that some animals are nocturnal.

Last night Catherine woke up so I went into her room to give her a cuddle. While I was there, I could feel her baby brother or sister moving in my tummy so I told her that baby was also awake.

'Yes', she said, 'maybe he is nocturnal'.

It seems Catherine already has a good idea that babies are night owls!

Crocodiles and pocket money

Last night Catherine ended up sleeping in our bed as she was having strange dreams about crocodiles eating children. It was a bit odd, so I asked her what was worrying her, and then she told me that she was feeling nervous about meeting all the new children and going to her new school in two-weeks-time. She asked me if Mark and I had been scared when we first went to school, and I explained that it was normal for people to feel a bit nervous about new things. She was reassured and then went back to sleep, although for a small person she is very good at taking up the whole bed AND all the bedclothes!



We have also started giving Catherine pocket money - £1 a week - and yesterday she took her little purse to the shops. She decided to buy herself a Noddy painting kit (only £1) and is enjoying having her own pennies. She is already working out that Friday is the day for her money, and I get pestered straight away as soon as Catherine knows its her 'money day'. The start of things to come...

Curly

Well, after all the wondering about how Catherine's hair would turn out after it grew back, we now have an official verdict: ITS REALLY CURLY!!! The last few days, as her hair is now beginning to become longer, the cute tufts of hair are turning into proper curls! She looks really cute and it is as if she has spent an hour setting her hair with rollers. She quite likes her curls as they are really bouncy and fair, although the challenge will now be getting her hair to grow quick enough to be 'really long' like she wants it to be. Once I get some photos, I will upload them.

Finger 'prick'

Today's finger prick was not tolerated well by Catherine, as expected. She had a very difficult time early in her treatment when she had to have lots of blood tests in her hands. So anything involving hands and feet was bound to bring back memories of pain and fear. She got very panicky before they did it and quickly realized that the 'clicker' had something sharp and pointy in it. I don't like seeing her in floods of tears, and afterwards she was a bit cross with herself because she thought she had not been very brave. I had to remind her that bravery is not about not being scared, but it is about being scared and doing the scary thing anyway.

We met Catherine's new consultant today and she really likes him. She had to lay down and be examined on the bed, and she was so chilled because last week someone had told her that the Consultant likes to give tickles. So obviously she thought he would be good fun. The Consultant suggested that the slight rash on her cheeks is actually caused by one of her chemo drugs. Catherine is also growing and has the highest Haemoglobin results since she began treatment - 13.6! Normally her HB had fluctuated between 11 and 7. So no wonder she is lively, then! We also met another family and Catherine made friends with the little girl. The little girl is also receiving treatment for ALL (Acute Lymphoblastic Leukaemia), but is only a couple of months into her treatment.

We are going back to hospital to have her Vincristine chemotherapy in two weeks, and they will be using her portacath so Catherine will feel more relaxed about this. Suddenly, her portacath and 'wiggly' seem so much more appealing to her.

Thankyou for your ongoing prayers.

Hospital day

Catherine's day at hospital went remarkably well. We arrived and were given a guided tour of the new facilities and were then taking to the special 'no eating area' so that Catherine could fast for her procedure without other people eating in the same room. She had some bloods taken and she is nearly neutropenic (her neutrophils are just borderline) which means that after her chemo on Tuesday, they will drop and she will probably be susceptible to infection in a few days time. Please pray that she doesn't get any infections.

The procedure is very different at the hospital. Instead of taking bloods through Catherine's portacath, they will be using a finger prick instead. This may or may not be a good thing depending upon whether Catherine realizes it is a small needle or not. Catherine is now terrified of needles due to some very bad experiences early in her treatment.

There is also a special theatre for the procedure away from the waiting area. So we take Catherine down a little corridor when it is her turn.

Personally I have been amazed at the way she is adapting to all this change. The nurses commented on how confident she was - she just got there and got on with everything.

At her new house, she only complains a bit about being bored - as any child on school holiday does - but she is not asking to go back to London and she is very settled. She had one night where she didn't sleep well, but she loves it now. Mark wondered whether it is because the house is similar to the one we lived in before training college, and subconsciously she remembers it as being a safe place.

Catherine is now really looking forward to starting school, and if she deals with it like she's dealt with everything else, it will be a breeze!

She is now being a mischief and running round the living room blowing my recorder. She has one of her own, but she's trying to get my attention. I'd better go and carry on unpacking the boxes, but thankyou for your prayers for her first hospital day. God carried her through again :)

Hospital Day

Tomorrow we are going to the new hospital. Catherine will be having a general anaesthetic and lumbar puncture. Please pray all goes well. Thankyou.

Lobsters and goldfish

Catherine has completely worn us out today. All day long she has chatted to us contantly...about everything. I hardly think she took time to stop and breathe!!! She continues to be excited but last night kept waking up and saying she was scared of the dark. So I ended up cuddling her lots but not getting much sleep myself in the process! Tonight she has settled easily, so I'm hoping she will sleep through.

The house is taking shape now, but I've had to take it a bit easier today as 'bump' is protesting at all the bending and unpacking. The last couple of days I have been feeling bump starting to become very lively and I'm looking forward to the time when Catherine will be able to see and feel her baby brother or sister kicking.

Catherine looked really cool today, as her short hair was spiked up and she was wearing her shades. She could easily have passed for a celebrity! We had our first trip out today to the pet shop in search of some goldfish. We got the aquarium out during the unpacking, and Catherine has been pestering me all day to go and see some fishes. We hadn't originally planned to go to the pet shop - only to register at the doctors - but we ventured in on the way back as there was one a few doors away from the surgery. Mark and Catherine were particularly interested in a little blue lobster, but he's a tropical creature, so I think Mark will have to put up with a black moor instead!!! I know I'm good at handling coldwater fish, but tropicals are a different issue.

New house! New house!

Well, we have now arrived in our new home. Catherine is ecstatic about the new house and has been leaping around the room with excitement. (Mind you, we nearly leapt around the room too!). I have NEVER seen Catherine so excited about anything. She was so excited that she couldn't even get to sleep this evening on our inflatable beds (our proper beds are being delivered tomorrow). Obviously, for Catherine, a new house far surpasses Christmas Eve, Birthday parties or holidays. She even saw the new Corps (church) today and was really excited about that, too.

If you are reading this and don't know how the Salvation Army ministry works then it may sound odd that everyone is excited about this new house. We get sent to a particular Corps (church) and we have no idea what the accommodation will be like. We were really delighted with our new home and it has just been refurbished. Tomorrow all our belongings will be delivered, and the challenge will then be to unpack and find homes for everything.

Next Tuesday, Catherine will be going to her new hospital for the first time for a lumbar puncture and chemotherapy into her spinal fluid (done under general anaesthetic). It will be very new for us all going to this new hospital, but we hope that she will adjust quickly to the different routine at the hospital.

Anyway, I had better go as we have lots to do tomorrow, and I need to stockpile the biscuits for the removal men.

I will always thank the Lord;
I will never stop praising him.
I will praise him for what he has done;
may all who are oppressed listen and be glad!
Proclaim with me the Lord's greatness;
let us praise his name together.
I prayed to the Lord and he answered me;
he freed me from all of my fears.
Find out for yourself how good the Lord is.
Happy are those who find safety with him.
The Lord is near to those who are discouraged;
he saves those who have lost all hope.
The Lord will save his people;
those who go to him for protection will be spared.




Selected lines from Psalm 34

Thankyou, God, for everything you are doing for our daughter.

'Bump'

Catherine is becoming very attached to 'bump', otherwise known as her unborn brother or sister. Every morning she comes in to give bump a cuddle, but many times today she has asked how bump is and whether she can have another hug with bump. Partly I think she is unsettled about the move, and she feels that 'bump' is her companion. It is quite sweet as she now addresses me as two people: 'Come on mummy and bump'.

She is still struggling with steroids, and doesn't feel like doing anything for very long. So she is basically bored but can't really be bothered to do anything to make herself feel better. She has had a few giggles today, though, but she has been very demanding. It gets frustrating when I can't do anything to make her feel any better. Only one more day of steroids to go until next month...hooray!

Steroid situation

The steroids are certainly taking their toll on Catherine and family this week. Catherine is being particularly clingy to me, but I cannot do anything right. It is already hard because we are trying to pack and clean to move house, and Catherine's friends have now already left. So most of the day we have been having disagreements, or I've suggested something, and Catherine has decided that she doesn't want it/like it/want to. So, bless her, she has been a limpet all day. Her immune system is down a bit too which doesn't help, and we are hoping that she will not catch anything in the next couple of days so that moving house is not delayed.

I am not looking forward to tomorrow, as the steroid effect only gets worse as the course goes on. We're all tired from the packing and cleaning schedule and Catherine is unsettled anyway. She has also had 'fizzily feet' from the Vincristine, but is more distressed about it than usual because of the steroids!!

The only way is up...!

Lasts and beginnings

Today was Catherine's last day at her local hospital before she moves to her new hospital in August and tomorrow is her last day at nursery. She had her Vincristine chemotherapy and is now back on steroids for five days. Hopefully the steroids will not make her much more emotional over what is already an emotional time.

She received information about her new school yesterday and was SO excited about seeing her name on the list of children. She was also excited to learn that there were 12 girls in her new class - lots of potential people to play with! I told her the number of boys, but it didn't have the same effect. She is very girly! At the moment she is desperate to have a go at a sleepover at her friends' houses. It makes me wonder quite how much actual sleeping would happen, but I'm sure she would have great fun. Our girl is growing up...

Grandparents and moving

We had a really good day yesterday visiting Catherine's Grandad. It always amazes me how she can go for ages without seeing her Grandparents but that she still has a special bond with them all. Her Grandpa is also visiting at the moment, but she found it very confusing that Nanny did not accompany Grandpa this time!

Having said that, Catherine is actually quite stressed at the moment. I thought I would have seen all Catherine's responses to stress through her treatment, but the 'moving house stress' is coming out much differently. She is getting a bit shouty and everything 'isn't fair'. So we keep having chats to talk through everything that is happening. I'm also giving her as much 'mum-time' as I can, because I find that this seems to help her. She knows that most of her friends will be leaving on Wednesday, and being a socialite (!), this is the bit that always hits hardest with Cath. During our summer placement, she spent most of it missing her friends! It is also weird for her seeing all her things packed up to take with us - she has spent half her life here and can only just remember moving the first time.

Anyway, she was a bit sick this morning so I'm going to keep an eye on her today. Her blood counts are good so she should be ok.

Latest hurdle with 14 months to go

Last night, Catherine asked her daddy why she had to have more medicines and bloods taken because she has had enough. She seems to be getting more distressed and fed up about having her bloods taken, and whatever we say, she just doesn't want to accept having to have all her treatment any more.

I can see why this might be happening now - we are moving a long way away from her friends and she will be starting a new school and hospital. Everything else is 'coming to and end' but her treatment hasn't also come to an end. It must be so frustrating and a bit confusing for her. Why should all this change, but why should she still have to be prodded with portacath needles and have her moods messed around with steroids? I think this seems to be what she is thinking. We keep explaining that her treatment stops her from becoming ill, but she is impatient now for the end of it. Only 14 months to go...

Please pray that she starts to feel more peaceful about things. She deals so well with everything, but it is still hard for her.

Sibling

Just a little post to say that Catherine will be having a brother or sister, due early next year.

Blood? No big deal

The weirdest thing happened to me the other day. I was watching a hospital programme briefly as I flicked through the channels and came across a scene showing an operation. I sat there gripped, watching the blood and gore. I didn't shy away. I didn't try and turn it over quickly. It all seemed so normal and natural.

I would NEVER have been able to watch a programme like this before Catherine's illness. I was always too squeamish - its why I never trained for the medical profession. And now I'm an officer in The Salvation Army, I've suddenly lost my fear for surgery, blood and hospitals. Surprising what a year in and out of hospital does for you...

Groceries and cupboard space

Catherine's immune system is low again, and we have been told to halve her chemotherapy drugs to allow her body the chance to recover a bit. She is borderline neutropenic, (neutropenia is where there is no immune system) so we are hoping her counts will recover quickly with all the risk of Swine Flu etc. It seems bizarre to me that we miraculously got through the Chicken Pox scare to then have to be thinking about Swine Flu, but the advice from the Hospital suggests that Chicken Pox had more risks associated with it than Swine Flu at present. However, please continue to pray that she doesn't have any viral or bacterial infections or side effects.

Looking around the kitchen today, I realised how annoyed I was at the number of grocery items sprawled across the work-top. The ketchup or salad cream often gets left out and I have only now realised how really irritating this has become. It never seemed to be a problem last year. And then I realized why. We had to relocate the grocery items so that we had shelving space in a high-up cupboard for all Catherine's chemotherapy and medicines.

It comes to something when you are moving house and hoping for more storage space for your chemotherapy, so that there's more room for the groceries!

For the parents

I have been told that some parents who have recently been informed that their child has leukaemia are reading this site. Just to say, you may want to read the earliest posts on this blog from last year, to reassure you that we also felt completely overturned by this diagnosis but that there is a way forward. If you would like to get in contact with us, please email Catherine's address catherineisgreat88@rocketmail.com. You are not alone. Catherine's mummy x

Feeling good and upbeat!

Catherine is doing really well, and since the last time I posted on here, she has enjoyed a camping weekend and a trip to the local swimming pool with her nursery. She is feeling good and is very upbeat about life. She is looking forward to going to 'big girl school' and doing some ballet lessons when we move. She has wanted to learn ballet ever since she was three-years-old, and we had started her on lessons, but her diagnosis changed things. It was during her first ballet lesson last year that I first thought something was not right, as she got very tired easily and complained of aching legs. Obviously she was poorly, but we didn't know at the time. So she is very excited that she will be able to start learning again and putting all her ballet outfits to good use!

It is hard to believe that next month it will be a year since her diagnosis. What a rollercoaster it has been! But it also been a year of miracles and answered prayer. Catherine still finds it odd that she is the only one of her friends with a portacath, and that she is the only one that has to keep having chemotherapy. The other night I told her that there are hundreds of children in the UK who are being treated for Leukaemia (naughty blood cells) and others who are being treated for other Cancers (naughty cells). This seemed to make her feel less unusual, and she settled down to sleep.

Catherine seemed to think that when we move house it will be the end of her treatment, but we had to explain to her that it will be next October before her treatment ends. We will still need daily chemotherapy, monthly intravenous chemo and steroids and a lumbar puncture and chemotherapy three times a year. But she is doing very well, and we are just so thankful for that.

All was/is well!!!!

Thank you so much for your prayers. Once again, Catherine has defied the odds and is well! She is still on her oral antibiotics, but is bouncy and happy and has not had any more pain. We were all able to be at Commissioning, which in itself proved the power of prayer. I will update more later, but this is just to put people's minds at rest.

Urgent prayer request

Hi everyone. Tomorrow, we are being commissioned (ordained) and we need to be there as a family. Catherine is performing, and she is desperate to attend.

We had Catherine's blood results through this morning and she is definitely fighting an infection. Thankfully she has neutrophils to fight the infection, which is why we are currently not on our way to an in-stay at hospital. In the case of getting a temperature, we would need to go straight in, but the hospital has said that if her ear infection were to become worse, we would also need to go and stay in hospital.

Last night she was in great pain with her ear and was awake crying until 2am. Then she had some relief as, I think, the eardrum burst, so she slept and the pain had gone by the morning.
She is on oral antibiotics and was still able to go to nursery this morning, but the blood results show something is going on.

Please join with us in praising God for everything he has done for Catherine so far, and praying for complete protection and healing for her from this infection. This is so important. Catherine needs to be there tomorrow and so do we. We are victorious through Christ. Thankyou.

More ear pain

We've just been to the hospital to have Catherine's ear examined as she has ear pain again. The doctor has prescribed us some oral antibiotics, but the did suggest that, as it occurs after her chemo, it may be a side effect of her Vincristine chemotherapy as it can effect the nerves and make things feel more sensitive. However, her eardrums are inflamed so she is also having a blood test to make sure there are no infections. She is also on steroids so is emotionally sensitive, too.

Please pray that she is well by Saturday for commissioning. Last year she had to miss the ceremony and she was sad she could not perform. We are trusting she will be well for her own commissioning day, as she is an honorary Witness for Christ!

October 2010

Catherine has been doing really well recently and today she received some more chemotherapy (Vincristine). The only problem is that she will now be taking steroids at Commissioning, so I am praying that it doesn't affect her mood so much this time. I want her to be able to enjoy it, not feel like she is not in control of her emotions.

This evening she asked Mark again how much longer her treatment will go on for. It is surprising that many people think she is not having chemo any more because her hair has grown back and she has much more energy and stamina. However she still needs her daily oral chemo until October 2010, plus other chemo and lumbar punctures. We have also received a letter from the new consultant at her new hospital, and she is booked in for her lumbar puncture and intrathecal chemo on August 11th. She will be introduced to the nurses, doctors and playworker.

One day I know Catherine is going to ask me much more about her treatment and what her illness really meant. I am pleased that I will be able to tell her about all the prayer support that has gone into her treatment, and about all the ways God has worked in her situation. I am not looking forward to telling her in detail about the original illness, and the fact that she will still need to have check ups for the next ten years which will involve the dreaded needles (her portacath should be removed in 2010).

Thankyou for continuing to pray for Catherine. It means so much to us.

Ear 'popped'

Last night, Catherine told me her ear 'popped' and she was then able to get to sleep. This morning she was delighted to wake up and not be in pain, although it is pretty clear that her eardrum had burst so the pressure had now gone. Still, she feels heaps better and went to nursery today. This afternoon she has been making up songs and dancing with her friend. It was very funny to hear some of the lyrics they came up with. They drew some music notes on a piece of paper and sang looking at them as if they were in a choir! It made us all laugh. This evening she is now in bed and is still singing. It is so nice to hear her all happy and feeling better again.

Very sore ear :( and a very long post...

Catherine is in a lot of pain at the moment with her ear. Her neutrophils are down again, and she now has the usual ear-infection. Her 'pain medicine' doesn't seem to be getting rid of the pain and she is now desperately tired but can't get to sleep because it is hurting her. Tomorrow we will call the hospital and get some oral antibiotics from the pharmacy. Please pray that she doesn't get a temperature, otherwise we will need to pack the suitcase and have intravenous antibiotics for a few days. Poor Catherine. Everytime her neutrophils are down and she gets a cold it goes straight to her ears. She is cuddling her dad as I write this.

She is also worrying a bit about her short hair at the moment. Today she was delighted when one of her little friends cut a piece of hair off because Catherine thought she was going to have short hair too. She also doesn't want to wear trousers because she is concerned people will think she is a boy. It doesn't seem to matter how beautiful we say she is with her short hair. I just think she will be pleased once it all grows back long again. I think she is focussing on her hair at the moment because she knows she is going to be meeting lots of new people at her new school. She says she is a little bit nervous, but then anyone would be starting 'big girl school' for the first time.

I think she is most nervous about changing hospitals because she will not see her play lady there. She really likes Vikki and she enjoyed doing all the craft things. I told her that there would be a new play lady but Catherine was not that impressed. It will be a bit odd, as each hospital has different routines. For example, at our new hospital we will need to attend at least fortnightly whereas at the moment we have been going monthly. This is partly because there are community oncology nurses in London who have taken bloods weekly but not at our new house. Also, at our new hospital, the Consultant does all the lumbar punctures whereas in London, there is a team of anaesthetists and doctors. I'm sure everything will work out well, but we have to try and ease Catherine in to so many new routines in the next few months: new house, new school, new hospital, new church, new friendships. We are, however, looking forward to getting to our new location and getting settled - we are once more in a state of limbo, not settled where we are but not where we are meant to be!!! Despite everything, though, she is pretty adaptable, although I think the hardest bit for Catherine, like myself, will be leaving friends. I think we are both pretty useless at doing this - goodbyes are rubbish. Not necessarily the best way to be for an officer who is going to spend her life moving around, but I can't help it. I actually LIKE people, and so does Cath and Mark. So please pray for us all as we pack, clean and generally get stressed on the run up to another big move.

Actually, I refuse to be stressed. It is not good for the complexion...

Sleepy

We had a nice weekend seeing Catherine's grandad and catching up with people. Catherine overslept this morning and also fell asleep in my arms after nursery today, so I think she wore herself out with the excitement. It was quite nice having cuddles with her this afternoon - she was pleased to come home and have a snuggle. Tomorrow she is having her bloods taken so we will see how her neutrophils and HB are getting on.

Grumpiness subsides

Catherine is feeling more cheerful today as the steroids come out of her system. Yesterday, though, she made a breakthrough. She told me that she thinks she gets grumpy because of the 'cold medicine' (Vincristine). Whilst I think she has done really well to make the link between how she feels and treatment, I only hope she will take the 'cold medicine' next time (actually it is not the cold medicine but the steroid she takes afterwards which causes her mood swings, but she has worked out when it starts!). Personally, if I knew a medicine made me feel bad, I would not want to take it. I hope she will still be ok to take her medicine.

She is very excited at the moment because she will be seeing her Grandad this weekend for Father's Day. We haven't been able to see him since Christmas, so she is looking forward to the visit. We are also going to see Catherine's new school next week as she has an induction day to meet some of the other children. I think she is feeling a little bit shy, but I think I have managed to buoy her up a bit. She is generally quite outgoing, imaginative and kind so I have no concerns about her making friends. Even her bossiness may work in her favour, although with children the same age rather than younger, we will have to see what happens...

Not impressed

Catherine is still struggling with steroids today and she is not impressed by how she feels. I have managed to get a few smiles from her today, but otherwise she is very tired and starting to eat everything in sight. She has cravings with the steroids as well, which means that not just any food will do. I am glad tomorrow is the last day of steroids until next month, as I know she will soon feel better. Tomorrow I am having a day with Catherine while Mark is out. Normally this would be a great time as she is lots of fun. However, she is under the weather but still gets bored so I'm going to have to find some gentle entertainment for her for tomorrow. Wish me luck!

Steroid sadness :(

Catherine has been pretty good until she started the steroids yesterday. She has been telling me that she 'doesnt feel right' and is very sad and clingy. It has really altered her moods again, poor thing. Today she fell off the see-saw and banged her chin which didn't help. Tonight she has been telling me that she doesn't feel well and that she doesn't think she is well enough for nursery tomorrow.

She has also been talking about her new hospital which we will be attending from August when we move. It is another specialist oncology hospital and we are praying that she will have a smooth transition to the new hospital. It will be very different for her as she is used to the nurses and playworkers where we are now, so we are hoping she will settle quickly. It is odd how you get into a hospital routine, but it will be odd for all of us getting used to the new procedures at the next hospital. Due to the way the hospital is set-up, we will also probably need to go once a week instead of once a month, as we have been told there are no oncology community nurses to do her weekly bloods at our new home. This will mean an afternoon a week out of school for her.

Here's hoping she feels better tomorrow.

''Wobbly medicine?''

Despite a bad cough, Catherine is still doing well. This weekend we took Catherine to a photographers and had a family photograph taken. We had been waiting until Catherine felt comfortable with her hair, and now that she likes her short hair, we thought it was a good time. It was very good fun, and it was nice getting an updated picture taken.

The other day I told Catherine about the fact that I need to go to the hospital in a week's time for an endoscopy. I thought she might be concerned, so I explained that I would need some medicine a bit like her 'wobbly medicine' (the name Catherine gave the anaesthetic because it makes her feel a bit 'wobbly'). I think she misheard me, because suddenly she exclaimed ''Oh no, I don't need wobbly medicine, do I?''. I replied that she didn't need 'wobbly medicine' and it was only mummy that would need it. Then she pipes up: ''Oh well, that's alright then''. Thanks, Catherine, for your concern!!!!!!

On Tuesday Catherine is having another dose of Vincristine (chemotherapy) at the hospital followed by five days of steroids. Last time, the steroids made her very emotional. Please pray that they don't make her feel so miserable this time. Her neutrophils (immune system) are still low, so please also pray that she doesn't get any infections. She has a bad cough and it would not be good if this went to her chest. Thankyou.

Small miracles

Catherine has remained completely chicken pox free, despite nearly all her little friends having chicken pox in the past few week. I think only one of her friends remains without the dreaded pox, and that little friend was the one who came camping with us last week! I am continually amazed (although I shouldn't be really) by the power of prayer and the way that God has carried Catherine through her illness. There have been difficult times, but all the way through it is like God has cushioned us, buoying us up and giving us strength and comfort to get through the hard times.


We still live with the tension of knowing that she has low immunity but realise it could be so easy to put life on hold and not do anything. So we chose to go camping which she thoroughly enjoyed, and it was great to see Catherine leaping around enjoying life. We could wrap Catherine up in cotton wool and choose to do nothing, but we have chosen to live life to the full, living in trust that all will work out for the good.

Thankyou for praying for Catherine. I truly believe that it is your prayers that have helped our little girl.

Legoland and chicken pox

Today, we had a great trip to Legoland! Catherine and her friend had a fantastic time going on the rides and playing in the water activities. The next few days we are taking some time out with Catherine and some friends and will probably not have internet access, but I will update everyone when we get back.

Unfortunately, even more of her friends are coming down with chicken pox so please can you pray for protection for Catherine at this time. Miraculously she has managed to avoid it so far, but she still needs your prayers as nearly everyone she knows has caught the virus in the past few weeks. Thankyou

Catherine

Much better

Catherine is much better today and so she was able to go to the park for a friend's birthday. She still has a very low immune system, but the virus just seems to have disappeared. You wouldn't think she had been poorly. Praise God!

2 Corinthians 4:8

I believe that bravery awards for children going through chemotherapy and radiotherapy treatment are a fantastic idea, although sometimes I think that an endurance award would be more appropriate! Catherine has been brave in her treatment so far but today I saw bravery on a greater scale.

When I told her that she had to go and have another two injections, she was obviously quite distressed and upset for a short while but composed herself so that we could get ready and make the journey to the hospital. We entered the treatment room and she was fine. A bit nervous but otherwise ok. When the nurse arrived and she saw the two needles she was very afraid.

It made matters worse when she had the first injection because it was very painful. She cried a great deal and it was clearly very difficult for her. I tried to comfort her as much as possible, but I could see she was having a rough time. The problem was that there were two injections, not just the one. For a split second, I wondered how on earth we would convince her to have the second injection considering the pain she had just felt. But slowly she turned her body round, and in floods of tears offered the other arm. That was it for me. I really had to focus on getting her through it otherwise I would have been in floods of tears with her. She stoicly sat through the ordeal again. I glanced across at Mark and he was also amazed at her courage.

During the walk home, she hugged me all the way with her face pressed tight against mine. We celebrated the end of the day with a chinese take-away. Catherine enjoyed a big bowl of rice and was allowed to watch some 'daddy programmes' (In our house we either have Catherine programmes - CBeebies - or Daddy programmes - anything other than CBeebies).

My daughter is as tough as they come.

Today, she is my hero.

ZIG needed

The blood test results show that Catherine has no chicken pox antibodies left in her blood which means that this afternoon she will be having two needles of ZIG injected - one in each arm! Our specialist nurse has asked, half-jokingly, if we could go after she finishes her shift, because she gave the last injections to Catherine last time and is concerned that Catherine will start to hate her!!!

ZIG is a blood product that contains high levels of chicken pox antibodies. ZIG causes chicken pox infection to be less severe. In some cases, ZIG may help prevent infection.

Otherwise, Catherine is steadily improving, and I don't think she has chicken pox but another virus due to her low neutrophils. So this is good news, but now we have to prevent it happening in a couple of weeks time with more ZIG and lots of prayer!

Thankyou for praying.

Lady in waiting

We came home from the hospital this afternoon and are now waiting to find out whether Catherine has any chickenpox antibodies and whether they can identify her viral infection. She doesn't have a temperature, so they were happy to let her come home and give her some oral antibiotics for now. She has also been given a different painkiller which is really effective and has made her feel much more comfortable. So we've had a good evening together, all three of us cuddling up on the sofa. Normally Catherine would be in bed for 7.30pm and we would be working on essays, so it has actually turned into an unexpected family time for us all. And because the painkiller is working, she is no longer upset and tearful and is enjoying the cuddle time. We even got to watch a programme on TV which was located a few miles down the road from our new home, which was quite exciting! So a silver lining in the middle of a cloud.

We are praying that Catherine will be feeling much better tomorrow.

Going for tests in hospital

The test results are in, and Catherine is not anaemic but has hardly any immune system. Also, three of her friends have now come down with chicken pox. The hospital has asked us to go in for tests to see whether she has any chicken pox antibodies in her blood from her last injection and also to give her a good check-up as she is definitely not well. The hospital is concerned that she is brewing the virus.

She was up for most of this morning and did a bit of colouring with me but then put herself back to bed. We are very concerned for her at this time. Prayers would be very welcome.

Catherine is not well

Last night Catherine had a really bad earache and this morning she is feeling a bit nauseous. She also looks like she might be anaemic as her fingernails are white and she slept in until 8.45am this morning, which is extremely unusual! Last time her blood counts dropped quickly, she had a bad earache and was very tired, so we are hoping that this is all that is wrong. At the moment, she is in her PJ's on the sofa with a hot water bottle.

The hospital said that one of the first signs of chicken pox for Catherine would most likely be vomiting with a temperature. The community nurse is coming shortly to check Catherine's bloods to see whether it is because her counts are low.

Please pray that this is not the beginning of chicken pox and that there is no infection brewing. If it is her blood counts, which it could be from her symptoms, then we can get her a blood transfusion in the next couple of days.

Another one of Catherine's friends has just come down with chicken pox. You think you've just got through the threat and then there it is again! So it is all happiness in our household as we face the excitement that is chicken pox yet again. So I am doing a Greta Garbo today and want to be alone. So if you don't see me around, that's why. Nothing personal.

Tonight's excitement

Catherine had a great day today and the effects of the steroids are definitely wearing off again. She has been giggly and smiley again, and is almost back to her old self.

This evening I put her to bed. 'It's time for sleeping', I said. Catherine replies 'I can't sleep because I have no eyes!'. Obviously, if she has no eyes, she cannot close them...

A while later, she says, 'I can't get to sleep mummy because my head is stupid, and I can't lay down'.

She can be so inventive sometimes!

A good procedure

Today's procedure went really well and Catherine was fantastic - really cool and calm. She didn't even flinch at having her 'wiggly' put in and she was so chilled out at having the anaesthetic that she was almost asleep before they gave it to her! A cool cucumber! She also really enjoyed all the crafts today, and it was hard dragging her away from the play table! She spent most of her time painting and using coloured sand.

The consultant also met with us today and said that, from their point of view, Catherine was doing extremely well on her treatment. This is always encouraging :-)
When Catherine had her anaesthetic and chemotherapy into her spinal fluid, they also took some of her bone marrow to check that there are no 'naughty blood cells'.

It was our last visit to the Royal Marsden Hospital before we go to our new specialist hospital when we move. I didn't realize until we got there. We still need to have chemotherapy at our shared care hospital before we move, but it was odd leaving all the friendly staff that we have got to know at the Marsden. I get the feeling that our Consultant would have liked us to be staying close by so that she could see Catherine's treatment through to the end. But I told her I would let her know how things were going. The nurses, doctors and play staff have all been brilliant and really helped us in many practical ways. The Clic Sargeant lady has also helped us greatly with all the different forms and paperwork that needed to be completed.

The hospital is looking to raise money to form the best childhood and teenage cancer hospital in Europe, but they need to raise funds first. Their plan can be found here www.royalmarsden.org/plan.

Night owl

We had an interesting night last night with Catherine. She didn't sleep well, so came in our bed. Then I ended up sleeping in her bed. Then she asked me to leave her bed so she could sleep. 'Sorry, mum', she said, 'but I want my bed now'. Then she woke Mark up at 5.30am because she wanted him to pass her the DVD player. She shouted for him so that she didn't come into our bedroom and wake us up!!! The steroids play havoc with Catherine's sleeping pattern and then she feels very tired during the day. She's still a bit sensitive, but we found today that if she could be distracted by her friends and other activities, she felt a bit better.

On Monday we are going for a general anaesthetic and lumbar puncture at hospital. Catherine will receive more chemotherapy into her spinal fluid. Please could you pray for the anaesthetist and doctors and nurses performing the procedure and for the procedure to go smoothly. We will also be seeing Catherine's consultant.

Thanks also to Alison and John - I've just managed to access Catherine's email account again and found your messages!

catherineisgreat88@rocketmail.com

I will put some recent photos of Catherine on the blog soon, as I realised today that I haven't updated her pictures in a long while.

Cath's steroid misery

We seem to have worked out the problem - steroids! Normally the effect of steroids doesn't hit Catherine until the end of the five days of treatment, so it has been quite bizarre to see it floor her this time round. She told me today that she doesn't feel ill but she doesn't feel herself. She also said that she felt very tired and not herself this afternoon and 'should have phoned you from nursery'. She looked really tired when she came home today and just cuddled me for ages with a very sad face. In bed I told her that she would only feel 'not herself' for a few days and then she would feel better again. I think she felt reassured, but we still have another three days of this to go. I think she copes ok at nursery, but as soon as she gets home she relaxes and tells me all her woes. Poor C.